I was going to write a post about just one of my medication horror stories, but I now have two medication horror stories, and the second story is even more troubling than the first. I’m writing about these experiences partly to vent, but mainly to provide information about how some of the meds my doctors have prescribed have caused some very serious problems.
Topamax
I’ve written about my terrible experience with Topamax in a previous post, but I left out the scariest part of the whole ordeal. To recap, here are the side effects I experienced when taking Topamax to prevent migraine headaches:
Nausea 24/7
Complete loss of appetite
Sudden and unwelcome weight loss
Loss of balance and motor coordination
Falling asleep in the middle of the day
Feeling like a toxic mess inside
In the middle of all these side effects, something happened that was potentially life-threatening. We were in New York City, and I was taking a shower, when I turned to reach for the soap and slipped. I fell in the tub, and then I fell out of the tub. I had never slipped in a bathtub in my entire life, and I realized only later, as I watched my balance and motor coordination deteriorate, that the Topamax had caused it. The one thing that saved me from serious injury was that I had studied karate for several years and had learned how to fall safely. So, I instinctively kept my head up and my hands up, and rolled my torso onto solid ground. I was left with sore hips and shoulders for a few days, but given that I could have sustained a serious head injury or broken bones, I consider myself very lucky.
I have now weaned off Topamax and will never, ever take it again. I’d rather have the migraines, and that’s saying a lot.
Lorazepam
WARNING! WARNING! WARNING!
Don’t ever take Lorazepam unless you are dying, it helps with the anxiety, and you will never need to withdraw from it.
I have taken 1-2 mg/day of Lorazepam for about 5 years now, and had no idea that it created physical dependency until last week. Yup, that’s what I said: physical dependency. In fact, it’s been prescribed by three different doctors, and each time, I told them directly that I absolutely could not take anything narcotic or addictive. What part of that statement did they not understand? Or did they just not know what Lorazepam does?
After attempting to withdraw from Lorazepam myself, I suffered an acute reaction that was far worse than any withdrawal reaction I’ve ever had from any other med. I hardly slept for two nights. I was sweating through my clothes. I was crying and frightened and in so much pain that it was mentally and physically unendurable. I felt like my body was coming apart. I found myself pacing up and down the floors of our house saying “Misery, misery, misery.” I couldn’t imagine why it was having this impact. Then, I looked up information on how to taper off the Lorazepam in order to avoid pushing myself to the edge of sanity, and I found out that it’s a benzodiazepine and a tranquilizer. In other words, it’s in the same category as Valium and Librium. It’s addictive. There are many people who want to get off benzos, who know that they’re having no positive effect, but who can’t because the physical withdrawal is so unbearable.
Because I highly value my sanity, I’m back on about 1 mg/day now and can finally sleep and tolerate being in my body. I found a great support site for people withdrawing from benzos, with instructions for how to withdraw from Lorazepam using (ugh) Valium. My next step will be to try to find someone who knows what they’re doing to monitor me. Wish me luck, because I’m not feeling a great deal of trust in medical professionals at present.
My Future with Meds
After the hellish insomnia of last week, I remembered the constant, intractable, trauma-induced insomnia of the first 29 years of my life. It was awful, and I never want go back to that. I used to take a non-addictive tricyclic anti-depressant to help me sleep, but it stopped working. Decades of psychotherapy did nothing to help the insomnia; the tricyclics really gave me my life back. The benzos help me sleep, but obviously, they’re not a long-term solution. I’m beginning to feel that the insomnia is really at the root of my anxiety and depression. When I sleep well, my anxiety and depression start to fade. I’m starting to accept that I might need to take medication for insomnia for the rest of my life, but I have to find a non-addictive alternative.
If, in fact, a prescription medication is the only alternative, I’m not going to another doctor and saying, “So, what can you prescribe for me that won’t be addictive?” I’ve tried that. It didn’t work. Instead, I’m going to research alternatives, find the one I want, walk into my doctor’s office, and say, “Write me a prescription for this one.”
From now on, I’m doing my homework.
© 2010 by Rachel Cohen-Rottenberg
Good luck! I’m sorry you’re having such bad results. The same thing happened to me with my meds–the doctors didn’t mind prescribing me addictive drugs or even drugs that were lethal in combination with each other. I stopped taking all my psychiatric meds when I was 18 and all my symptoms of depression stopped. I had been diagnosed as depressive and having OCD, diagnosed with ADHD earlier in life, but now I know I have autism. When I came to terms with my diagnosis I still refused meds and I’ve been doing cognitive behavioral therapy with a doctor who is actually making me better. Well, the autism will never go away and I don’t want it to, but I’m learning better coping skills.
I hope things get better for you, whatever you decide. I enjoy reading your blog.
Hi Rachel,
Sorry to hear that you’re having such a rotten time with those meds. Glad that you’re ok though.
Ideally you shouldn’t ever accept a doctors’ word on medications. It’s best to look them up and check out all the side-effects and user complaints. You have to take everything with a pinch of salt because some lobby groups are against all kinds of medications but at least they’ll correctly indicate if the medication is addictive.
Despite the many complaints that people have against wikipedia, I still find that it’s often the best source of “balanced” opinion on medicine.
there must be an art to prescribing drugs, and i really suspect a lot of physicians just don’t have it. (get out the latest sales flyer and free sample from this visiting salesman: this will do.)
it’s especially frightening that you specifically said, “nothing addictive”… and were promptly given something addictive. (even if that physician DID have an auditory processing disorder
—which is unlikely—this is no excuse. awful to find out after the fact, when in withdrawal(!)
i was taking buspar for a while to manage anxiety. i was told of a few side effects—dizzy spells, drowsiness—but nothing major. i found out from an online source that one of the possible long term effects is tardive dyskinesia—repetitive involuntary movements with a neural basis.
i wasn’t sure i wanted to add any new stims to my repertoire.
i pitched them.
This is my free, tooting the greatest medication explanation site on the Web, run by someone I trust: http://www.crazymeds.us. The founder is autistic, and started the site after he realized that he wasn’t getting the kind of info on medication side effects that he needed. It’s indepth but written for a layman. The language can be pretty rough, but it’s the most informative place I’ve *ever* found for med info.
Did you know Topamax is prescribed for appetite suppression? Anorexia/nausea is a well known side effect. No wonder you had problems. Oh, I just checked, the link is good, and lorazepam and benzos are on there. I highly recommend this site to anyone with med questions.
I also think there should be info on the Web about how to do a benzo taper. Slow and steady is what does it. I’ll search around for you, if you want. Otherwise, ignore my advice.
Bonnie, thanks so much for the link to crazymeds.us. I will take a look there. I’m sure others will find it helpful as well.
I should have mentioned more specifically that on the site I linked to in my post, http://www.non-benzodiazepines.org.uk/, there is very good information on how to wean off benzos like Lorazepam in tiny steps. In fact, I signed up on the forum and explained my specific situation, and within 24 hours, the site owners had given me two different options for withdrawal schedules, with lots of cautions to take it very slowly and adjust the doses in response to what my body is telling me.
I have a learned a ton from that site in the past 2 days, and here is the most important thing:
IMPORTANT: If you try to wean off Lorazepam cold turkey, without the help of another medication, you could induce seizures and bring about your own demise. I am not kidding. The impact of simple withdrawal is life threatening. Nice of Dr. Meds to tell me that, too, eh? They say that the best way to go is to cross over to an equivalent dose of Valium, because Valium stays in the blood far longer than Lorazepam; therefore, it’s easier to wean off the Valium than it is to wean off the Lorazepam. With Loraz, it’s in your blood for perhaps 8 hours, which means that if you go longer than 8 hours without it, you start to go through mini-withdrawals–something it’s now clear I was doing for awhile until I increased my dose from 1 mg to 2 mg. It’s probably also the reason it’s so easy to become dependent on it. As much as I’d love to just take a .5 mg tablet twice a day before I start weaning off, I’ve realized that I’m continuing to induce mini-withdrawals. So, I’ve decided to stabilize the dose at .5 mg every 8 hours, get used to that for a week or two, and then start the cross over process to Valium. Once I’ve crossed over to an equivalent dose of Valium and I’m off the Loraz, I can beginning weaning off the Valium, and then I will be through with this sh*t. It will take several months, though. Oh, joy.
The only good news is that 1.5 mg is still a low dose of Lorazepam. Many people have been prescribed up to 10 mg a day, and others take more than that because the med stops working after awhile.
I can’t believe this has happened to me–a crunchy granola girl who has taken such care not to become addicted to sugar, much less prescription meds. I feel like someone’s been slipping me a mickey for five years and I’m the last to know. I am beyond pissed.
I’ve been on and off lorazapem for years and don’t experience any withdrawal effects when I go off it, I guess I’m just lucky. I usually take 1 mg a day, once a day, to sleep.
May I suggest valerian? It’s a natural herb that I have heard has very good effects in helping people to sleep. Of course some people have negative reactioons to it as well so you will want to research it thoroughly.There are a lot of natural herbs on the market aimed at helping people sleep. Melatonin is commonly used for ASD people. Chamomile may help. Valerian is the one I’ve heard the most though.
http://www.health.com/health/gallery/0,,20306715_9,00.html
Also, there is something called Magnesium Calm, a powdered magnesium drink , that is supposed to be very calming and help with sleep too.
http://www.calmnatural.com/insomnia-remedy-restless-leg-syndrome-sleep-disorders Has good reviews
Lemon balm and passionflower are also mentioned on a quick Google search I did
Good luck
Kate
For me, a combination of meds and Omega 3 seems to help. But it’s no panacea. Having caring friends and a good therapist are even better. And friends don’t require a prescription.
Best of luck with the whole process, Rachel.
Thank you for posting all the useful information you know. I’m also going to be very careful about prescribed medications in the future.
My daughter has trouble falling asleep too- I find it odd for someone so young (9 years old now, but she’s had this perhaps two years already). Is this an autistic characteristic?
A lot of autistic kids and adults have problems sleeping. I had a terrible time falling asleep as a kid. In addition to the state of trauma I was in, I was in sensory overload a lot, and had constant low-level anxiety about being “different” and not really being able to articulate it. Since we autistic folk tend to have pretty revved-up nervous systems, sleeping can be an issue.
Thanks for your reply. I feel guilty about something that happened earlier. She was still awake and it was incomprehensible to me. I wasn’t very empathic. I wish I knew how to do the best for her. I find it so hard to give her enough time. I told her that I was tired and that I wished that I had a kid who didn’t take up so much of my time and energy. I regret it now. Earlier today she was playing outside on her own. She was happy but she had a happiness of a much younger kid. It was nice to see but on another level it was very obvious to me that kids of her own age would be less happy playing in sand (and so forth) and that it must be hard to adapt to kids in her class. She can talk the talk like the other girls (talking about boys and fashion), but deep in her soul she’s so much younger. I think that you might be right about the low level anxiety. I’m going to have to try to figure out a way to help her with that. She’s been trying to be a “big sister” recently, and she gets so disappointed by little things in her interactions with her sisters. What Chuck wrote earlier made me understand why. To her they are not “little things” they are broken rules, infringements of integrity, betrayals. Thanks Chuck for making me understand.
Hi Jennifer,
All mothers make these sorts of mistakes. The best thing to do is to talk with your daughter and let her know that you’re human, you were tired, you made a mistake, she is fine as she is–you know the drill.
As for feeling much younger than others…I definitely have that, too, and I always have. I’ve always felt like a little kid. There are parts of me that are very mature, but there’s an innocence I have that I’ve always felt ashamed of. Now I’m coming to cherish it. It’s really a gift to have retained childlike parts of myself, especially since I didn’t really have a childhood! (And who said God doesn’t have a sense of humor???)
It’s a shame that we autistic folk often feel so uncomfortable about feeling childlike. So many different spiritual systems are designed to give us beginner’s mind, the innocence of little children, the clarity of a life without guile. And here so many of us have it naturally and yet it takes a long time to feel okay with it. You might suggest to your daughter that she has a natural gift that many people go through great spiritual work to develop.